Endometriosis Is More Than A Painful Period

Hello, friend.Welcome back to Radiant Rise.Today, I want to go deeper into something that has affected nearly every part of my life.My health.My body.My work.My relationships.My emotional well-being.And the way I imagine my future.Today, we are talking about endometriosis.Not the simplified version.Not the version where someone says, “Oh, so you have painful periods.”I want to talk about what it can actually feel like to live with this disease.Because endometriosis is so much more than a painful period.And for many of us, the pain does not disappear when the bleeding stops.In my case, I no longer even have a uterus.I had a hysterectomy.And yet endometriosis is still part of my life.That fact alone is something I wish more people understood.Before I continue, I want to remind everyone that I am speaking from my own experience. Endometriosis can look different from one person to another, and this is not medical advice.This is my story.For me, endometriosis has meant years of pelvic pain.Lower-back pain.Abdominal pain.Pain that can move, change, intensify, and sometimes become difficult to describe.It has meant gastrointestinal symptoms.It has meant pain that can affect my ability to sit comfortably, work, sleep, eat, use the bathroom, or focus on anything else.It has meant appointments.Scans.Emergency-room visits.Hospital stays.Procedures.Surgeries.Medications.And long stretches of uncertainty.It has also meant constantly asking myself:Is this symptom coming from endometriosis?Is it coming from my digestive system?Is it coming from adhesions?Is it coming from chronic pain and central sensitization?Is something new happening?Or is this another part of a disease that has already affected so much of my body?Living with overlapping medical conditions can make it extremely difficult to separate one source of pain from another.Sometimes there is no simple answer.Sometimes several things may be happening at once.And that uncertainty can become exhausting all by itself.In 2021, I had surgery where endometriosis was found and removed.The procedure included treatment of pelvic endometriosis and adhesions, along with additional work involving areas around my reproductive organs and pelvic anatomy.For a while, I hoped surgery would be the turning point.You enter surgery hoping that once the visible disease is removed, you will finally be able to move forward.But endometriosis does not always give you a clean ending.In February 2023, I had another major surgery.I underwent a hysterectomy, along with additional treatment for endometriosis and an ovarian cyst.My uterus was removed, but my ovaries were retained.That distinction matters.A hysterectomy can stop uterine bleeding because the uterus is gone, but it does not automatically remove every endometriosis lesion or prevent every future symptom.For me, the pain did not simply disappear.The surgery changed my body.It changed certain symptoms.But it did not erase the disease from my story.And that was emotionally difficult to accept.One of the things people often assume is that a hysterectomy cures endometriosis.I wish it were that simple.When people hear that I had a hysterectomy, they sometimes assume the problem should be over.But I continue experiencing chronic pelvic pain.I continue having abdominal and lower-back pain.I continue needing specialists.I continue facing the possibility of more surgery.That can feel incredibly isolating.Because once people believe you have already received the “big solution,” they may struggle to understand why you are still sick.You may even begin questioning yourself.Why am I still hurting?Why did the surgery not fix everything?Why am I back in another doctor’s office?Why does my body still feel like it is fighting me?But a body is not a machine where one part is removed and every connected problem automatically disappears.Endometriosis can involve tissue outside the uterus.It can be connected to inflammation, scar tissue, adhesions, nerve sensitivity, and changes throughout the pelvis.And every person’s disease is different.For me, removing my uterus did not mean removing every source of pain.One of the most frightening parts of my current journey is the possibility that endometriosis may be affecting areas near my bowel or deeper structures within my pelvis.I have experienced severe gastrointestinal symptoms.Urgent diarrhea.Abdominal cramping.Bleeding.Pelvic pressure.Pain during bowel movements.Pain that can feel like several systems inside my body are reacting at once.I also have other diagnosed gastrointestinal conditions, so I cannot say that every digestive symptom is caused by endometriosis.That is part of what makes this so complicated.But my endometriosis specialist has taken the possibility of deeper or bowel-related disease seriously enough to continue evaluating and planning my care.And honestly, that brings both relief and fear.Relief because someone is considering the full picture.Fear because of what surgery may reveal.When endometriosis may involve the bowel, ovaries, appendix, pelvic sidewalls, scar tissue, or other nearby structures, surgery can become more complicated than simply removing one visible lesion.You begin preparing for possibilities.What if more disease is found than expected?What if an ovary cannot be saved?What if another organ is involved?What if recovery is longer than planned?What if surgery helps some symptoms but not all of them?These are not abstract questions when you are the person signing the consent forms.I currently have another surgery scheduled.And this one carries a great deal of emotional weight.The plan includes looking for and treating endometriosis, but there are also possible decisions that may need to be made depending on what the surgeons find.There is a possibility that my right ovary could need to be removed.There is also a possibility of appendix involvement and removal if medically necessary.Those possibilities are frightening.Even when you understand why something may need to happen, that does not make it emotionally easy.There is a strange kind of grief that comes with preparing for surgery when you do not know exactly what you will wake up without.You try to be practical.You review paperwork.You ask questions.You arrange time away from work.You prepare your home.You communicate with family.But underneath all of that planning, there is fear.Fear of complications.Fear of pain.Fear of what they may find.Fear of what they may not find.Fear that the surgery will confirm how serious the disease has become.And fear that even after surgery, some pain may remain.Endometriosis comes with grief that people do not always recognize.There can be grief connected to fertility.Grief connected to organs you have lost.Grief connected to the possibility of losing more.Grief for the energy you once had.Grief for the version of yourself who did not have to plan life around symptoms.Grief for missed workdays.Canceled plans.Interrupted intimacy.Lost sleep.Hospital visits.And the constant need to explain yourself.Sometimes I grieve how much of my life has been organized around pain.Not because my life has no joy.It does.I have people I love.I have meaningful work.I have Radiant Rise.I have writing, advocacy, and dreams I am still building.But gratitude does not erase grief.I can love my life and still mourn what illness has taken from it.Both can be true.Endometriosis pain does not politely wait for a convenient time.It does not check whether I have work.Whether I have plans.Whether someone needs me.Whether I already missed too many days.Whether I can afford another medical bill.It arrives when it arrives.Sometimes it builds gradually.Sometimes it hits hard.Sometimes it feels like pressure, cramping, pulling, burning, stabbing, or a deep ache that settles into my pelvis and back.Sometimes it becomes difficult to stand upright.Sometimes I can still smile and function while hurting.And that can make the illness even harder for other people to understand.Because they see me speaking.Working.Writing.Laughing.Posting online.They do not see what happens afterward.They do not see me lying down.Using heat.Taking medication.Canceling the rest of my day.Trying to recover enough to do it again tomorrow.A person can look composed and still be in significant pain.One of the hardest realities is trying to maintain employment while living with an unpredictable disease.My job does not stop because my pelvis hurts.Tenants still need help.Applications still need to be processed.Calls still need to be answered.People still expect me to be present, professional, and productive.And most days, I want to be there.I want to work.I want financial stability.I want to fulfill my responsibilities.But there are days when my body makes that incredibly difficult.There is also the anxiety of wondering how people perceive you.Do they think I am unreliable?Do they think I am exaggerating?Do they understand that I am trying?Do they realize how much effort it sometimes takes for me to simply remain upright and focused?Living with chronic illness can make you feel as though you must constantly prove your work ethic while also proving that your illness is real.That is an exhausting position to live in.Endometriosis is also connected to a long history of people having their pain minimized.You may be told that painful periods are normal.That cramps are something everyone experiences.That the symptoms are caused by stress.That the tests look fine.That the pain cannot possibly be as severe as you describe.And when you hear those messages repeatedly, you can begin doubting your own body.You start asking:Am I overreacting?Should I wait longer?Should I stop talking about it?Am I being difficult?But pain is information.Bleeding is information.Changes in bowel or bladder function are information.Severe fatigue is information.A patient should not have to become critically ill before their symptoms deserve attention.I have learned that advocating for yourself is not being dramatic.It is not disrespectful.It is not attention-seeking.It is survival.Living with chronic pain affects mental health.The uncertainty affects mental health.The medical appointments affect mental health.The fear of another flare affects mental health.The loss of control affects mental health.There are days when endometriosis does not only hurt my body.It hurts my confidence.My patience.My ability to imagine the future without fear.It can make me feel trapped inside a body I cannot predict.It can make me angry.It can make me sad.It can make me feel isolated, even when people love me.And then there is the pressure to stay positive.To be inspirational.To turn pain into purpose.I believe deeply in hope.But hope does not require pretending.I can choose hope and still admit that this disease has broken my heart in certain ways.I can be strong and still be tired.I can advocate and still be afraid.I can be grateful and still feel angry about what my body has endured.Support does not always require the perfect words.Sometimes support looks like believing someone.Not questioning whether their pain is “really that bad.”Not comparing their illness to someone else’s.Not offering a miracle cure they did not ask for.Sometimes it means understanding that canceled plans are not rejection.That fatigue is not laziness.That needing accommodations is not special treatment.That a person may be grieving even while they are still moving forward.Support can look like asking:“What would help you today?”It can look like sitting nearby.Helping with a meal.Driving to an appointment.Allowing someone to rest without making them feel guilty.Or simply saying:“I believe you.”Those words can mean more than people realize.I want people to understand that endometriosis is not just a difficult menstrual cycle.It can remain active and painful even after major surgery.It can affect people who no longer menstruate.It can involve more than reproductive organs.It can affect digestion, mobility, intimacy, sleep, employment, relationships, and mental health.It can require multiple surgeries.And even after treatment, some people continue living with chronic pain.I also want people to understand that the severity of pain does not always match what is visible from the outside.Someone can be dressed.Working.Speaking clearly.Smiling.And still be fighting intense pain.The absence of visible proof does not mean the absence of suffering.To the person listening who has spent years trying to get someone to believe you:I believe you.To the person who is waiting for surgery:Your fear is understandable.To the person who had surgery and is still in pain:You did not fail.To the person grieving a body, future, or choice that changed:Your grief is valid.To the person who feels guilty because illness has affected work, relationships, parenting, or plans:You did not choose this disease.You are doing the best you can inside circumstances you never asked for.And to the person who is newly diagnosed:Your life is not over.Your path may look different than you imagined.There may be difficult days.But you are still you.You are still worthy.You still deserve love, support, proper medical care, and a future that holds more than pain.Right now, I am preparing.Preparing emotionally.Preparing physically.Preparing my family.Preparing for work leave.Preparing questions for my doctors.Preparing for the possibility that surgery may bring answers I want—and answers I do not.I am hopeful.But I am also scared.I am ready for relief.But I know recovery may be difficult.I want clarity.But I understand that surgery may reveal a complicated picture.And I am trying to give myself permission to feel all of that.I do not need to be fearless to move forward.Courage is not the absence of fear.Sometimes courage is signing the paperwork while your hands are shaking.Sometimes it is showing up to the hospital even though you know how much recovery may hurt.Sometimes it is trusting yourself enough to say:I deserve a better quality of life.Endometriosis has changed my body.It has changed my plans.It has taken time, energy, comfort, and pieces of the future I once imagined.But it has not taken everything.It has not taken my voice.It has not taken my ability to love.It has not taken my purpose.And it has not taken my hope.I do not know exactly what the next surgery will reveal.I do not know what recovery will look like.I do not know which symptoms may improve or which ones may remain.But I know that I will continue asking questions.I will continue advocating.I will continue telling the truth about this disease.Because endometriosis is more than a painful period.It is a whole-body, whole-life experience for many of us.And everyone living through it deserves to be believed.Until next time, be gentle with yourself.Listen when your body tells you something is wrong.Keep asking questions.And remember:Your pain is real. Your story matters. And you are more than what this disease has taken from you.This is Michelle Baldwin, and this is Radiant Rise.Healing. Hope. You.Radiant Rise | Michelle Baldwin is a reader-supported publication. To receive new posts and support my work, consider becoming a free or paid subscriber. Get full access to Radiant Rise | Michelle Baldwin at radiantrisemystory.substack.com/subscribe